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PC: Patient-centricity or merely politically correct?

It is time that pharma started prioritising patient-centricity activities, so that the concept becomes something that patients notice and benefit from, rather than just a mantra
PC: Patient-centricity  or merely politically correct?

The mantra of patient-centricity has unquestionably become ubiquitous within pharma, and there can be few marketers in the industry who are not striving to understand the concept and turn it into something which in reality will make a beneficial difference for patients. But just how successful has that effort been so far - and what does pharma need to do to turn the aspiration for true patient-centricity into reality?

At its most basic, patient-centricity is about a duty to inform patients and their caregivers about their condition and the subsequent treatment. By providing patient-friendly support materials at key touchpoints and extending their efforts to understand, and go some way to meet, the patient's emotional or social support needs, pharma can help secure better adherence and better disease management.

If successful, this is undoubtedly a win:win for both pharma and patients - if they join and stay on the treatment pathway, they stand the best chance of improving their condition, and pharma will see a commercial benefit too.

Beyond this basic involvement in better communication comes the concept of patient engagement (another buzz word much used but not so well understood). Patients are being brought into the marketing process across the whole treatment journey. Often patient support organisation relationships are nurtured, and in some cases internal patient advocacy roles are created, by pharma in order to understand patients' unmet needs' from first symptoms through diagnosis, to ongoing management.

Certainly the patient support organisations approve of this trend and in general bring a wealth of knowledge to the table, based on their familiarity with the patient network and often their personal experiences as well.

The evidence would suggest that the influence of the patient is still not really understood - or at least fully taken on board - by pharma companies. Despite the explosion in patient research that has taken place, all too often the findings are not awarded as much weight as the HCP findings - because the strategic value of the patient voice has not been grasped. This is merely paying lip service to 'patient-centricity'.

So is patient-centricity working well? Is it totally embedded within what pharma does? Or is it another 'buzz word concept' that at best is being partially and patchily implemented?

Ask the patient
To answer that question, of course, you need to look to the patient body. Out there on the ground, among the patients themselves, how empowered do they feel - or even want to be? Are patients getting what they need from HCPs and from their treatments? Are these patient-centric activities within pharma actually improving their quality of life in a tangible way?

Importantly, are clinical trials for new treatments being set up to measure patient-centred outcomes? Of course the endpoints of these trials need to meet the clinical (and payers') desired outcomes, but true patient-centricity should mean those endpoints are the ones counted as relevant by the patients themselves – as they are the ones enduring the illness and taking the treatment.

Are patient-centric activities within pharma actually improving quality of life in a tangible way?

I suspect that for the most part patients have not noticed pharma's 'seascape shift' towards patient-centricity. Yes, they may have noticed the availability of online information, the appearance of informal patient forums and more formal support organisations. They may even have engaged with them, especially in disease areas with low awareness, tricky diagnosis and debilitating effects.

But alongside all this, they have probably noticed the pressure on health systems from an ageing population and the (at least reported) mushrooming costs of treatment - both of which imply the individual is less rather than more important and less rather than more likely to receive the best treatments available. And that plays against the perception of patient-centric healthcare as being focused on what the patients need.

Knowing their own needs?
At its hub, patient-centricity is - or certainly should be - about patient need: what patients must have and what they would like to have as their condition progresses. In particular it is about helping patients meet their unmet needs.

The problem is that even if you ask them, many patients find it very difficult to envisage those needs, or to articulate them. Quite often they have normalised their condition - they no longer see the magnitude of their symptoms. They adapt their lives around the illness to the point where they genuinely don't notice their condition, or certainly not as much.

Quite recently I worked with a group of asthma patients who were quite clearly wheezing in front of me. The normalisation of their condition was leading them to take risks with their health, for example not going to A&E when it would have been appropriate to do so.

I got them to take a stack of cards on which were written their symptoms, their daily activities and their emotions, and asked them to sort these cards into piles representing 'how often this happens - often, sometimes or never'.

When they sorted them all out and they were faced with a massive pile of 'often' and 'sometimes', their reaction was: 'Oh my goodness, I had no idea my asthma affected me this much.' Without this kind of realisation, being genuinely patient-centric will always be difficult, and it shows how using research techniques may be a big part of the solution.

Because this adjustment means that the patients themselves may not reveal their symptoms as much as they should, sometimes you have to go to witnesses of the disease such as families or carers to get a better picture of what is going on. This is taking patient-centricity beyond the patient themselves, which is a more difficult concept to grasp.

Healthcare professionals make an assumption that the patient will tell them what they need. That is a fair assumption, given the very short time that they have for most consultations - what can they realistically hope to get from a patient in the regulation seven minutes?

Patients will tend to say that they are 'not too bad', or else outline their most recent symptoms, but inevitably they forget a lot of what might have happened to them since the last appointment. So the quality of conversations between doctors and patients is really sub-optimal.

Using research techniques to solve the problem
Pharma can play a part in improving this scenario, if only by providing materials such as, on a very simple level, patient diaries or digital tools (such as apps) to be filled out, for example, over a two-week period, recording the in-the-moment experience.

That becomes a win:win situation for everyone concerned: the doctor gains a better picture of the patient's condition; the patient thus gets better treatment which is more appropriate; and the pharma company plays a real role in ensuring genuine patient-centricity, gaining both kudos from the HCP, and a proper, appropriate - and effective - prescription for the right medication.

In some diseases, self-monitoring is not an attractive prospect for patients, particularly where they are getting progressively more ill. But we know that in conditions such as diabetes or epilepsy, monitoring is effective and leads to better outcomes for patients.

In some ways this is about using traditional research techniques, combined with newer technologies, to help doctors become more aware of the breadth and depth of the patient's experience of symptoms; instead of skimming the surface in the way that often happens without such intervention, this can give the doctor a deeper insight into what has really been going on with the patient.

Because we know that the concept of patient-centricity is so important, we in the pharma industry have been throwing everything at patients, trying to identify their needs (not always very effectively) and seeking to meet them all (not always very efficiently).

What we are not doing is prioritising this activity effectively, thinking intelligently about where pharma should put its money so that the activities we are doing that are patient centric are the best ones to prioritise. We cannot keep throwing resources at everything we perceive as patient centric, without knowing whether it is having an impact - or indeed is being noticed by the patient.

Patient-centricity will remain a vital part of everything we do. It is time that pharma started prioritising our activities to ensure that we are not just paying lip service to the patient-centricity mantra, but that we are genuinely optimising what we do. We need to ensure that the worthy goal of patient-centricity yields results both for pharma in terms of their investment, and for patients and their families in terms of better care and a better quality of life.

Article by
Jane Barrett

Master practitioner of patient insights at Cello Health Insight at

15th December 2016

From: Healthcare



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